After 6 months of battling with health care providers who either didn’t care, or wanted to report my family to child protective services, I was diagnosed at age 13 with Crohn’s disease. 20 years later, I’m missing a lot of intestine, have gained a bunch of symptoms and side effects, and am in my seventh year facilitating a regional IBD support group. I’ve been incorrectly diagnosed with ovarian cancer, told I had an hour to live, been a passenger in an ambulance that got lost, fought for reasonable accommodations at work, bought and lost a home, participated in clinical trials for two medications that are currently very popular, and probably used half of the public restrooms in the United States. Currently I’m a program analyst with a BFA in graphic design and a general studies MBA.

I was a Stanford Medicine X ePatient Scholar for the 2012 conference. I was honored to be invited back as an ePatient Scholar for 2014 and was selected to present a panel on invisible illness and pain tracking. This panel is also notable for including the first virtual patient panelist at MedX.

My interests especially lie in patient advocacy for multiple chronic conditions. I believe that existing in silos is not good for individual patients, nor their disease communities. We can all learn a lot from each other, and many of us are on similar treatments, have similar challenges, and can benefit from joint advocacy and creative solutions. Additionally, I focus on normalizing illness and pain, especially by talking about it openly online.

If you’ve followed me online long enough, you probably know I have two pet bunnies. They content with city life and I’m happy to be able to have their hay delivered through Amazon Prime.

5 Responses to About Me

Hi Carly — I sent you a message on FB after reading your story on the Patch. Thank you for telling your story – that takes courage and bravery. People need to know how political chicanery has real-life consequences for our friends and neighbors. I am sorry for all the hardship you and your family are experiencing right now and hope that it gets much better soon. We need to end this shutdown, and get this Congress to pass a clean CR so everyone can get back to work — with all their back pay! The small businesses that depend on federally-employed customers will never recoup the income lost from this shutdown. Congressman Wittman seems befuddled/confused in the way he’s approaching this. I’m hoping to make it clear for him and your story is a laser beam of reality. Anyway, the message I sent to your FB page is in your “other” box. We have a mutual friend in the lovely, amazing and super-talented Gwen Zepeda. I hope we can be friends as well.
~ Alicia

hello! My name is Marina. I’ve been a type 1 diabetic for 25 years. Based in NYC. We are very much in-line in our thinking in approach regarding illness, disease, and the dialogue that it needs to hold in our society.

though The Betes is currently focusing on type 1 diabetes as it is what I know, our intention is absolutely to grow to cover chronic conditions of all kinds.

I look forward to following your blog, and once you move to D.C. maybe we can find an opportunity to connect.

Hi Carly! Thank you so much for being such a kick ass patient advocate! I found you through the NPR story. After hearing your story, I was wondering if you have been evaluated for Mast Cell Activation Disorder and/or Mastocytosis. Mast cells are in every organ of your body. Usually, when they start to misbehave it’s in one area or system like GI and then can spread to other areas slowly or very quickly, (i.e. bladder pain, pelvic pain, hives, asthma, allergies, flushing, general muscle pain and it can even manifest itself as fibromyalgia-like pain).

I only ask because so few doctors in our country have been trained to recognize Mast Cell Activation Disorder. It’s an emerging field in only the past ten years, so unless your doctor went to medical school recently, they may not know about it. For example, your doctor might have biopsied some of your cells for Mastocytosis, but that would not show Mast Cell Activation Disorder. Testing for MCAD is via blood and urine.

Dear Carly,
I’m interested in using the picture you show in your discussion about being harassed for parking in handicap spots (http://blog.chronicarly.com/handicapped-parking-and-fear-of-harassment/) in a chapter that will appear in an academic book on spatial politics, forthcoming this fall. I’d like to tell you more, and get your permission to reprint (or find its original source if you don’t hold copyright). Can you email me?